The Statewide Parent Advocacy Network
is the Family Voices State Affiliate Organization for New Jersey.

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through this national network, Family Voices provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care.

To learn more about the national initiatives of the National Family Voices, please visit the Family Voices website at www.familyvoices.org .

If families or
professionals have questions on medical issues affecting
special needs children, Family Voices can help.

Do
you have a child with special health care needs?

Do
you need information about health care or insurance?

Would
like to help promote responsive, accessible, quality health care and
health insurance?

Call
Family Voices of New Jersey!

We
provide information, assistance and outreach in working toward better
health care systems for families of children with special health care
needs in New Jersey.Family
Voices tackles medical issues affecting special children such as
managed care, insurance issues, SSI, and new changes in special
education.We have
videos, literature, and a national and statewide newsletter-all of
which are free.Family Voices also has a speaker’s bureau for presentations
for families and professionals as well.Call us at (973) 642-8100.

Special Education Medicaid Initiative

Special Education Medicaid Initiative Schools are sending letters for parents to consent to access Medicaid for related services such as therapies on IEPs. Typically, if the district wants to access employer insurance, parents need to be aware that if they sign consent, it may count against the child's lifetime or yearly cap if their plan was "grandfathered" under healthcare reform and still has a limit on benefits. However, if they have a Medicaid HMO it's a win-win because it doesn't count against the child's cap, and the schools can get federal matches and provide more services. But there's a glitch. If the child has a Medicaid waiver it will count against their medical expenses. What they should do is write that they're not consenting but that the district has made them aware of the Medicaid initiative. They do not need to put the reason why they're not consenting. Otherwise districts get penalized if there's no proof they informed parents. Please note that on page 5 of the regulations it states "In order to avoid duplicating claims, LEA [school district] service claims will not be processed for a student who also receives services under a waiver program." so hopefully if a parent is unaware and signs, it's a safety net. Please note that Medicaid HMOs should not be requesting IFSPs (early intervention) or IEPs (special education) and reducing services at home because a child gets some services at school. The school services are needed for FAPE (free appropriate public education) and home services are medically-necessary so they're not the same. If parents have problems, please contact us or fill out the Medicaid problem form http://www.spannj.org/familywrap/Medicaid_Problem_Report_Form.pdf

Bright Futures:
Family MattersA free electronic newsletter for families and professionals
about news, information, and activities in the maternal and child
health community. To subscribe, send an email to
Bev Baker-Ajene.

The Family Voices Coordinator can help in three key areas: health care and health coverage, family support, and education issues for children with special healthcare needs. We help families and professionals, write articles, letters to legislators, and comment at public hearings on a state and national level. Family Voices can help parents of children with special healthcare needs get the services and supports they need.

Family Voices-NJ is also involved in a variety of family support and family caregiver groups. The Family Voices Coordinator serves as the Community Caregiver Action Network volunteer for National Family Caregivers, which helps family caregivers take care of themselves while caring for another (www.thefamilycaregiver.org ), the board of Caregivers of NJ, and the Family Support Center. The coordinator also has a monthly national blog for parents at www.hopefulparents.org. She teaches free parent classes for the local chapter of NAMI (National Alliance on Mental Illness) and has many resources on children’s mental health including New Jersey’s child behavioral health system.

Family Voices-NJ can help parents navigate the healthcare system. Whether you need to find out about your child’s condition, find insurance, get information on healthcare reform, fight a denied claim, or get SSI (Supplemental Security Income), etc., Family Voices-NJ can help. You can reach the Family Voices Coordinator at familyvoicesnj@aol.com.

Our children with special health needs are like other children. They
want a healthy, happy childhood. They want to grow up to be productive
adults. They live in our cities, towns and rural areas. They go to
school and enjoy community events.

Our children have challenging health
conditions that complicate their lives. Some have special physical,
mental or emotional needs. Some live with a chronic illness. Some have
a brief but life-threatening medical condition. Some of our children
need only an accurate diagnosis, routine treatment or monitoring while
others will require life-sustaining technology, treatment and
medicines throughout their lives.

Our children receive their care from a
combination of financing and/or delivery systems. Many New Jersey
children with special health needs receive care coordination services
from Special Child Health Services Case Management Units.

As families, we live every day with the
uncertainties and challenges of chronic childhood illness or
disability. We know that every child is just one day away from having
a special health care need.

These Are Our Principles

Families are the core of any health
system and should be respected and valued for our expertise and
commitment to our children.

Combining talents and resources in a
good family - professional partnership creates the best relationship
for managing the care of our children with special health care needs.

Universal access to quality primary and
specialty health care should be available at a reasonable price for
all families.

An effective, flexible health care
system should be guided by medical and family needs, not bureaucratic
policies.

Comprehensive, coordinated,
community-based care should be available for all families.

Cost effective care should focus on
outcomes, family choice and reduction of bureaucratic, duplicative
procedures.

Families and health care professionals
should be responsible for quality assurance on heath care financing
and delivery.